One on one support for adults dealing with cancer

Five lessons from a two-time cancer survivor

Dale Smith has become a bit of an expert when cancer comes calling. He’s not doing research or prescribing medication, but he IS empowering friends, family and CHN clients to take charge of their care, to have an active voice in their cancer journey.

It’s an expertise that’s built on years fighting cancer – his own and that of several loved ones. “I had my first surprise cancer in 1994. When that was all treated and dealt with, there was a sense that five years out from testicular cancer, you’re cured. Thankfully, because I was having follow up CT scans every three years, they found my kidney cancer in 2010.

Having faced cancer twice, Dale knows the fear of “scanziety” too well. But he’s a staunch advocate of the follow-up testing that saved his life when cancer returned. “I have to go get this, drink this drink, take this test. You have to grit your teeth because it’s better to know than not.”

Today, Dale is in good health. He’s active in his church and community. He’s playing golf. His outlook is realistic but filled with hope. “I’ve had cancer twice. I can ask myself when the third one will come. Or I can believe that I will die from something else many years down the road. I choose to be in the latter camp. Life goes on. I keep going.”

Here, Dale’s five tips for cancer patients and the people who love them:

Get connected to trustworthy resources – “When you’re newly diagnosed, it’s like ‘OMG!’ It’s happening to you for the first time. But you’re not the first. There are thousands of others who have gone down this journey before. Reach out.”
The resources available online have come a long way since Dale’s first diagnosis in 1994. But that has its own pitfalls. “People these days when they’re diagnosed with cancer, they get on the internet and get scared shitless,” he said bluntly. “That’s a bad thing. But if, in that search, you can get connected to reputable places like Cancer Hope Network, American Cancer Society or the Cancer Support Community, they can connect you and give you guidance. Don’t get scared by what you see on the internet; use it as information when you talk with your doctor.”

Trust your team – When Dale received his diagnosis, he and his wife were planning a move to England. After a brief delay, they soldiered through the move, eventually landing at Royal Marsden Hospital in London for the chemo protocol. Luckily for him, his oncologist at RMH was “on a first name basis” with his Memorial Sloan Kettering oncologist.“There is this network of medical professionals who really do know what they’re doing. You want any newly diagnosed person to get connected to that.”His advice to patients echoes that of so many others who’ve travelled this road. “Always get a second opinion. Or the equivalent.” For Dale’s second diagnosis, he was referred to a kidney surgeon who had been on his original surgery team in 1994. It also meant finding someone who was willing to explain the rationale behind decisions.He encourages patients to be “fully aware of pros/cons and the options that are available. Be engaged with the treatment plan, knowing that things might change as you go forward.” Even with a team you trust, “You’ll have questions. But don’t be afraid to ask the questions.”

Manage communication – Cancer is overwhelming. Adding check-in from concerned friends and family to an already full calendar of tests, treatment and recovery can be, as they say, “a lot.” That’s where Dale recommends an online service like caringbridge.org. The (free) service lets users share updates widely, minimizing the need for repetition. And it’s a small way to exert control in the out-of-control world of cancer.“Caring Bridge can be a real help to the newly diagnosed person and their caregiver,” he advises. “There’s all these people who want to know what’s happening. You can control your story, what it is you want to say.

Care for your caregiver – Dale’s first diagnosis came shortly after he married his wife Elaine, “The loveliest person in the whole world.” He shares the lessons he learned as they worked through his treatments with patients today.“As patients, we need to recognize that our caregiver has doubts and fears that they don’t want to discuss with us. Encourage your caregiver to also rely on other people. That support is another advantage Cancer Hope and Cancer Support Community offer.”

(And, for friends and family) Just be there – When your loved one is diagnosed with cancer, it’s all too easy to wait for “the right time” or hope to find the “right words.” But that waiting can soon slip from days into weeks or longer. A startling number of patients (like volunteers Joe and Kelly) recall the pain not of treatment, but of lost or silent friends.Dale’s advice is simple. “Yes, your friend is in the hospital, your friend is getting these strange treatments you know nothing about, but show up.” Showing up doesn’t mean offering false hope. “You don’t need to say ‘I’m sure it’s gonna be ok,’” he cautions. “You don’t know that.” Just be there. Perfect words aren’t necessary. “Having people show up to visit was so meaningful,” he recalls. “When I was in MSK – just having people visiting to show they cared, keeping the conversation as normal as possible, was really helpful.”